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Breezy basix 2 broken or unsuitable.

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Ellie666
Ellie666 Community member Posts: 4 Listener
I just got sent my first wheelchair by the NHS OT and I've been in tears ever since. I'd got mine and my kids hopes up that I'd be able to get out and about with them without being in agony. I knew it wouldn't be amazing and it was just going to be a stopgap I could maybe use in the shopping centre and one park with good paths while I save for a powerchair
 There's no pavement up to my home I live rurally and my care package is currently totally inadequate it's meant to be getting sorted but I don't have any care hours to help me get out and about so any mobility aids have to be able to go in a car boot and be taken in and out and assembled by me. I have Ehlers danlos and a spinal injury so the boot scooter I have I cannot assemble without an adult to help. Even my husband finds it a challenge and he's out at work most of the time I'm at home alone with only my kids to help who have special needs (yes it's absolutely negligent that they haven't sorted my care package out). 

So I asked for a self propelling chair I could lift in and out of the car in one piece just so I could go around the shops with the kids. They won't be able to push me most of the time because they're kids. They'll do it a bit but the novelty will wear off fast and neither of them has the spatial awareness not to slam me into walls and kerbs or other people's legs they are a nightmare just giving me space for my walking sticks always kicking them out from under me and walking in my path so I can't swing the stick properly. They are both autistic. 

They sent me a breezy basix 2 and I tried it out in a car park which is reasonably flat but it was hopeless. It doesn't roll when you give it a good push you just move as far as the wheels turn and then stop. There's no steering or control and if there's even a twig or a slight slope it veers out of control like a shopping trolley with a wonky wheel. I can't work out if it's just knackered or if this is a "self propelling" chair in name only and you could self propel around your hospital room. 
It's clearly not a chair a disabled person could use for daily mobility.  

I've been in tears ever since it arrived. Are these chairs always this useless or is this one particularly broken? 
I wasn't expecting a custom sports chair but I did expect one that would work for the limited things I'd discussed with the OT. 

I've read online about NhS vouchers and personal budgets. Does anyone know how those are accessed? 
I've emailed the OT who's supposed to be sorting my care package out as she's the only one with any sense and will call the ones who sent the useless chair on Monday. 
I'm just so heartbroken I got my hopes up thinking I'd be able to at least roll around the shops and have a break from struggling on my painful legs while I wait to see if anything can be done surgically. 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
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    I'm sorry to read how upsetting this experience has been for you @Ellie666, it can feel so frustrating when we don't have the right tools we need to feel fully independent. 

    It does sound like you've got a supportive OT who will be able to help, so please keep in touch with them, and be clear about how this has all made you feel. Hopefully you'll be able to discuss a more workable solution, because the breezy basix 2 clearly isn't working.

    I have a similar manual chair myself, from the NHS, and unless I have someone to help push, I can't go far at all. In the years since I've been lucky enough to self-fund my own powerchair, but I'd be pretty dependent if I had to rely solely on NHS support. 

    One of the hardest things to manage is the expectation from wheelchair services that you, as the wheelchair user, will always have support around, and that those people will be capable of handling/lifting/pushing your chair. 

    Let us know how you get on on Monday, if we can help with anything in the meantime, please ask. 
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  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 11,210 Disability Gamechanger
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    I'm experiencing the same problem I live in a rural area and there's no pavement as it's all county roads until you get into the the village. I wanted an electronic wheelchair but the NHS wouldn't give me one because I can mobilise in the house without a wheelchair so we ended up self funding and going through a charity called The sunshine Fund for one. 
  • newborn
    newborn Community member Posts: 832 Pioneering
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    Dear Ellie6666, So very sorry to know about your let-down.  The good news is you learned that one type of wheelchair is useless for you, without having first taken out a second mortgage and sold one of your kids or kidneys(!) (Apologies for humour, but as you and most disabled people know too well, you have to laugh or you would cry.) The bad news is there is no single answer for wheelchairs.

     Roughly, think of it as legs- plus- shoes. Ideally, you would have a whole garage- full of chairs, just as you have a whole range of shoes. You can't go dancing in wellies, nor cross a muddy field in ballet pumps. 


    I think you need to do a vast amount of research, best from a wheelchair user site. (Also, browsing mainly German or US disability exhibitions, as well as the Excell one in UK Pretty much ignore the NHS. Fine, if you can get at least a voucher towards what you really want.  But you alone must be your own expert. Only you know exactly what compromises you can or cannot live with. 

    There are some wheelchair hire places, but a second hand wheelchair shop would be a good place to get to know.  Things will go wrong or wear out, therefore you are a customer for years to come, if you find something you like.  So they want to help you. They will always have a car park or something where you can try things. The drawback is they tend to have limited stock and of rather standard stuff.  If you finish up buying online, and new, sometimes they can get a manufacturer discount which you couldn't get yourself, or sometimes they can get in touch with contacts in the trade even for second hand, so give them a try if you can.  Your post gives the impression you are very novice about wheelchairs, so every little bit of practice and  of new knowledge will be valuable in itself. 



    The holy graille is a chair light enough to lift, even if it is piece by piece ( sites show the weights, broken down by any detachable parts, which is handy if you need a battery boost, which you may, sooner rather than  later)  Wheels always detatch. 


    Having wheels on a slant makes them easier to push, but harder to get through doors.
    Big fat tyres go on rougher ground, but are harder to push.
    There are alternative propulsions such as levers.
    Also alternative power systems, such as in the wheels (heavy to lift though) or as powered add-ons.


    One great favourite is the single powered wheel in front, which gives numerous benefits. It can be pretty powerful.  It can be a bit cross-country, especially if you get some fat, all- terrain alternative wheels to swap on your chair.   It gives you a motorbike style steering and power control, positioned between your knees, in the natural place to keep the controls, and your hands, away from doorframes or passers by.  It means you can wear WARM gloves in icy weather, which you cannot when self propelling.  It fixes onto whatever manual you have, but lifts those damnable casters off the ground, so they cannot carry out their malicious spiteful plans to harm you by hurting your spine with jolts, then hurling you on the ground. 

    (Castors are horrible, rarely giving cushioning, usually intended to maximise the fun and excitement of being stopped dead and hurled out of the chair, because they have encountered a serious obstacle, such as a big nasty frightening  matchstick. )


    Shock absorbing is a whole problem on it's own. Front castors rarely have it. Whole chairs are made without it.  But whatever absobs shock, ie. shock absorbers and/or soft fat tyres, will also make pushing harder.


    People with pain in their backs may go round like the fairytale Princess and the Pea, perched on several wheelchair cushions. There are work-rounds. A child's blow-up swimming ring is light, folds flat, and can make a big difference when placed underneath the conventional wheelchair cushion, in absorbing the jolts.  Sometimes one under you and another behind your back is a good plan.


    Wheelchair cushions are an entire book- full of options. And expensive. But worth getting, if it is right. (NHS imagines that one basic wheelchair cushion is pretty much the all- size answer. No. It is Not.) Gel can be bliss, but costly and rather heavy, so a layer of it maybe a compromise. Foam is fine but variable in quality.


    The covers are a big part of the comfort options. You Do Not Want To Sit On Plastic Ever, for long, and certainly not in a heatwave.  So you can get deluxe cushions, and/ or use a square black  fabric cushion- cover to hold a folded up terry towel  on top of your hateful plastic covered cushion/s.  (That way,  you are serene and  not at all sweaty, when all around you are fainting in the heat.)   

      

    Graphene is the best thing for chairs to be made of, being incredibly light and strong. Sports chairs are made of it, (costing a footballer salary),  but, hey, why bother with those disabled people, when there is a whole graphene team searching for something, anything at all, to use up the stuff in any other way?

     (Now, they are actually experimenting with chucking it into the mix for cement..... well, it helps get rid of it, and there might even be a bit of demand from those. humans who really matter, i.e. the bosses of the  construction industry.)




    Dear Ellie please don't get tearful, just get cross at times in a good cause.
    We all need you, in the army of disabled people with lots to be cross about.
    And your children, who are so lucky to have you on their side, will sometimes need a battling mum
  • Ellie666
    Ellie666 Community member Posts: 4 Listener
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    Thanks for the helpful answers. I have identified an ultra light folding powerchair I could definitely manage. 
    Anything that comes into parts is a no no due to my hand issues but I've got to find £1700. 

    People including the OTs keep saying oh look on marketplace for secondhand but the ones that come up there are the kind of thing (not meaning to sound awful) that have come from elderly folk who have died not the kind of chair for an active younger person who will be lifting in and out of a car themselves or lives where there aren't pavements. I've never seen the one I want come up secondhand anywhere ever and I've been looking for AGES. 

    As @newborn says I can see really I don't need one. I want a really good manual sporty one maybe with a tri ride attachment AND the lightweight powerchair but I can maybe afford one for now and it needs to be the powerchair. 
    I was just hoping the NHS could give me something I could just use in like 2 very wheelchair-hospitable places for now as I was pretty well aware of wheelchair services limitations but they still managed to completely disapoint. 

    I'm going to try and pursue this voucher and I'll give the sunshine trust a call thanks @durhamjaide2001 for the suggestion I just don't know where to start with charities. 

    I've only just come out of complete denial about my mobility and accepted that leaving home or the car without a stick means a hasty detour into a shop to buy one and the hope of being given a wheelchair got me all excited for...something to be happening at least. I suppose after years of people saying it's fibromyalgia and bad posture and lose weight and do more exercise the sudden change of attitude after finally getting proper scans done privately (thanks NHS, not.) To physios and OTs not saying silly woman just walk and all fully being on board with me as a wheelchair user I was ready to embrace it.. and then they send me this piece of....*****.

    It really sent me off on a wobble. 
  • newborn
    newborn Community member Posts: 832 Pioneering
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    Good luck Ellie. By the way, thank goodness you got the right diagnosis in the end, after being dismissed. PS Nevertheless, do lose weight anyway, simply to make everything easier for yourself! 
  • newborn
    newborn Community member Posts: 832 Pioneering
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    Alex-Scope has an interesting point about the NHS assumption that everyone in the country is fully kitted out with a set of unpaid servants.

     Being dependent, simply for lack of a piece of kit, must mean a lot of wasted carer hours. 

    Currently I'm astonished that such a high number of hospital beds at c£400 a night are occupied by ready- to- leave, but nobody considers that many of them might not need any care at all, if only they were sent to ordinary hotels. 

     Being able to climb upstairs is not needed when there is a hotel lift. Climbing into a bath doesn't happen with a hotel en suite walk in shower. Cleaning is done daily in a hotel, no carers needed. There are staff night and day, in case of emergency. There is a whole kitchen staff ready to provide three meals a day. There is an assurance the heating and lighting and plumbing are all taken care of by maintenance staff. 

     All this must be cheaper than trying to convert somebody's house, and provide carers.  It must be cheaper than a care home. It must be cheaper than a hotel bed.

    There is no need to take over entire hotels, just a few rooms as needed. Even for those people who do need care visits, or physio etc, it makes sense to have this expensive professional time used in attending to a number of 'home-visits' all at the same address, instead of spending hours driving from one own-home to another.

    Councils do use hotel rooms for either single people or families, if they are migrants, so there is precedent for doing it. Why won't they free up NHS beds this way?

    Officials appear certain the whole population is either able to climb stairs, or needs full time nursing in a care home, and there is nobody in between.


  • Ellie666
    Ellie666 Community member Posts: 4 Listener
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    @newborn I'm actually not particularly fat! Im about average. It's just standard advice. I worked out so much on their standard advice I became a muscle Minnie now with a wrecked spine. 5 herniated discs by the time the physio told me to stop ✋️. I was working out most days in water and on the gym equipment because i had the wrong diagnosis and ruining my joints. 
  • newborn
    newborn Community member Posts: 832 Pioneering
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    Good grief. Actually I have seen something else your post and Anna's relate to, involving making people worse by lack of the right kit or even advice on what it is.

    Crutches are not supplied with shock absorbing ferrules, or cushioned hand grips. Which is fine, for someone using them for a weekor two after an ankle sprain.

     But allowing people to go for years damaging their hands, wrists, elbows and shoulders all for the lack of even informing them to go and buy themselves fairly cheap additions like this is unforgivable.   (And so is not offering gutter crutches or gutter rollators, or telling people they exist, so they can self fund for them, when their hands and other joints will be badly harmed by long term use of devices putting the weight on their hands)

    An OT who was about to retire 'risked' telling one patient about something she knew from her long career would transform horrible pain. It was for patients who could not bear the weight of bedclothes, or turn over in bed for pain,  but needed to keep warm.  It is a goose down duvet, which even then cost £200. But sure enough, when the patient bought one, there was no need for carers to keep turning him, each time causing agony. He was warm and comfortable and could at last get some good sleep because the pain reduced. 

     We asked the OT why she didn't dare tell people, and she said "We are scared to give people information about things which will help them, because they will expect us to provide it and we cannot go over budget, and cannot provide anything not already stockpiled in the store.  We would risk our careers and pensions if we rock the boat or take any chances when giving advice. "  

    Wouldn't it be good if professionals could post tips and advice online, on Scope, without revealing their names, just as general information people might pick and choose, if they are willing to use their own money ?
  • Ellie666
    Ellie666 Community member Posts: 4 Listener
    edited January 2023
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    Thankfully I do have crutches with ergonomic grips (no ferrules but i cant really use crutches now because of the herniations my good arm now has major nerve pain) but it really does seen to depend on the OT you get on the day. 
    The triage OT from the council is a superstar she's the person who came into my home saw me with burned hands and matted hair and home in chaos and said what the hell why have you only got 4 hours this is outrageous I'm going to sort this. She said contact me if you need any help with anything so I'm taking her at her word. 
    The other OT was helpful with other stuff she's given me that other OTs haven't but I'm scratching my head at how she listened to me describing my situation and needs and thought I'd be able to do anything at all with this chair!
  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 11,210 Disability Gamechanger
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    Ellie666 said:
    Thanks for the helpful answers. I have identified an ultra light folding powerchair I could definitely manage. 
    Anything that comes into parts is a no no due to my hand issues but I've got to find £1700. 

    People including the OTs keep saying oh look on marketplace for secondhand but the ones that come up there are the kind of thing (not meaning to sound awful) that have come from elderly folk who have died not the kind of chair for an active younger person who will be lifting in and out of a car themselves or lives where there aren't pavements. I've never seen the one I want come up secondhand anywhere ever and I've been looking for AGES. 

    As @newborn says I can see really I don't need one. I want a really good manual sporty one maybe with a tri ride attachment AND the lightweight powerchair but I can maybe afford one for now and it needs to be the powerchair. 
    I was just hoping the NHS could give me something I could just use in like 2 very wheelchair-hospitable places for now as I was pretty well aware of wheelchair services limitations but they still managed to completely disapoint. 

    I'm going to try and pursue this voucher and I'll give the sunshine trust a call thanks @durhamjaide2001 for the suggestion I just don't know where to start with charities. 

    I've only just come out of complete denial about my mobility and accepted that leaving home or the car without a stick means a hasty detour into a shop to buy one and the hope of being given a wheelchair got me all excited for...something to be happening at least. I suppose after years of people saying it's fibromyalgia and bad posture and lose weight and do more exercise the sudden change of attitude after finally getting proper scans done privately (thanks NHS, not.) To physios and OTs not saying silly woman just walk and all fully being on board with me as a wheelchair user I was ready to embrace it.. and then they send me this piece of....*****.

    It really sent me off on a wobble. 
    The Sunshine Trust is a North East charity for children and young people. 
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